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5 Life Lessons I’ve Learned From Thousands of TMJ Disorder Patients

With 10+ years behind me, I thought I’d post some thoughts on what it has been like, and most importantly, what I’ve learned, in the hopes that you could skip ahead a few years by applying these tips to your life.

I’ve been through pretty much every treatment, medication, and self-care modality that I discuss here with all of you. Splints, braces, medications, TMJ total joint replacement 3d renderinginjections, surgeries, physical therapy, etc, etc, etc. In 2006, I had my joints replaced with titanium implants.

I’ve talked with probably thousands of patients since I started doing advocacy. I’ve heard of every possible treatment, procedure, or medicine. Out of everything I’ve learned, some things have stood out, and I’m going to share some of these with you. I’ve noted them not as a rule…but a generalization. While they won’t be true for every single person out there….I do feel like they are true for many of us.

1. Find a patient who is at least one or two steps ahead of you in treatments or surgical procedures.

One of the rules of business (and life) success is having a trusted mentor that you can go to for questions and advice. This is also true for chronic illness. Having someone available to ask questions and to listen to their experiences is invaluable. Plus, when you just need to complain, there is no one better than someone who truly does understand what you’re going through.

2. Put an extremely high priority on pain management.

If I could shout one tip from the mountain top, this would be the one. Even for me, someone who is pretty knowledgeable and feisty when it comes to getting good care , I had NO idea my pain wasn’t managed….until it was. The difference between what I am able to accomplish with my pain managed is night and day. The other important thing is that pain management is not invasive. It won’t change your bite or put you in the position of having more surgeries down the road.

3. Pursue better….but don’t become obsessed with finding something that doesn’t exist.

You certainly have the right to feel better and pursue a better life…and you should! However, know that at the moment, there is no cure for TMJ disorder. There is no “perfect” treatment. When I say the word “know,” I mean, really sit with that statement and consider what it means to you and your treatment goals. There is no cure. How does this change how you feel about the treatments you are pursuing? This also does not mean you should lose hope that someday there WILL be a cure…far from it, actually. This is me telling you….giving you permission, to LET GO. You can have a chronic illness AND a fulfilling life that makes you happy. You don’t always have to be searching and hanging your whole life on treatments that may not help.

4. Realize that others do want to help you.

Let them. A well meaning family member’s advice may go in one ear and out the other, and that’s totally fine if you have already tried what they are suggesting, or you know it won’t help (just be polite, of course). On the other hand, if someone who has been through this gives you advice, consider what they are saying. REALLY consider it. Have you REALLY put in the effort to try everything you can to feel better? Have you REALLY listened? Spend some time thinking about this. I know it sounds ridiculous, but it can change your life. Are you really living your life and doing what is necessary to feel better?! Are you sabotaging yourself? Saying one thing and doing the complete other?

Will you EVER get better if you ignore the advice of those who have been through it before you? Will you EVER get better doing the same old things every single day that GOT you where you are TODAY?

I didn’t start seeing serious changes in my life until I started taking meaningful action on the things I knew I should do, and the things I said I would do.

Are you eating things that cause you pain? WHY?! You are the one that pays for it..start doing things that help, not hinder your progress.

5. No one cares as much as YOU do.

Nobody is going to care as much about your medical issues and general well-being as you will. So, it is your responsibility to learn and search for information that makes you the best patient you can be.

Half the battle is being confident in yourself and your ability to make decisions….so trust your gut instinct. Those around you take their cues from you. Unsure? They will be, too.

You do HAVE to make choices. You can either choose to drive your life and MAKE things happen FOR you….or you can have no control and LET things happen TO you.

Finally, even though I AM positive…It is not from a pollyana, Stepford wife, robot type place.

My goal is to share what has worked for me and the thousands of other patients I have talked to.

The bottom line?  These are the things that have worked. Period.

The common thread that runs through the thriving patients is not one type of treatment, surgery, or medication.

It’s an attitude.

This is YOUR LIFE. Do whatever you can to THRIVE, feel better, and never give up hope.

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9 thoughts on “5 Life Lessons I’ve Learned From Thousands of TMJ Disorder Patients”

  1. Thank you for this. I had convinced myself that my last surgery was pretty much going to “cure” my TMJ problem. I have come to realize that I was wrong. The pain is better and I can open and eat again. But the pain is still there. And I have decided that I am not willing to sit back and say that, since it’s better than it was when it was excruciating, I shouldn’t expect anything more. I will find a way to live a fulfilling life but the first step in that is finding pain management that works. I contacted my surgeon’s office, today, to let them know that there is still pain and find out what my pain management options are.

  2. Thank you for this. I had convinced myself that my last surgery was pretty much going to “cure” my TMJ problem. I have come to realize that I was wrong. The pain is better and I can open and eat again. But the pain is still there. And I have decided that I am not willing to sit back and say that, since it’s better than it was when it was excruciating, I shouldn’t expect anything more. I will find a way to live a fulfilling life but the first step in that is finding pain management that works. I contacted my surgeon’s office, today, to let them know that there is still pain and find out what my pain management options are.

  3. @Lorelei66 Hi Lorelei, I understand the position you are in, and I know how hard it can be…but I promise once you experience this shift in the way you look at things and in your expectations, things will get better. You mentioned on Facebook that you’ll be going to another surgeon…. are you still looking into pain management? Hang in there!

  4. The best relief I have from the nagging symptoms and the headache is taking the New Era Tissue salts number 6 (Potassium Phosphate) and number 8 (magnesium phosphate), natural and no side effects. take every half hour until pain and annoyance subside (usually takes effect with 2/3 hours), then 3 doses daily as it says on the container will suffice. It does work, well at least for me. If I run out and leave it for a couple of days the symptoms come back strong and hard.

  5. Hello,

    I was recently diagnosed with TMJ as a result of a head/neck injury sustained back in March. My dentist gave me a splint to wear, and has suggested physical therapy as well. Is there anything I should be aware of as I begin my journey to improve my symptoms? Any advice would be awesome.

    Chris

  6. I quickly learned that I had to speak up for myself as nobody else was going to do it for me.  When I had my first total joint replacements in 2007 and ended up having more pain than I started with, went to my surgeon and told him that I could not live like that.  After some efforts to fix the problem, it was determined that the joints had failed.  They were taken out and I was left with nothing.  My insurance did not want to cover new ones being put in, they were fine with me living with no joints at all.  After a few choice words from my surgeon and a letter that Stacy helped me write, I got my second total joint replacement just a year ago.  Again, the left side has failed and it too needs to be replaced.  The pain is hurndous  and there is days that I just don’t think that I can handle it anymore.  I know that this surgery is going to be a huge fight with my insurance and  need to mentally prepare myself for that.  But I know that I can do it.  I have to, it is MY life.  Nobody is going to care like I do becasue nobody is feeling the pain that I am living with every second of every day but me.  I am lucky that I have a surgeon that is willing to fight for me.  That is why I have been with him for 20 years.  All I can say is we can’t give up……ever.

  7. Please help with any advise!  I started with pain in ’09, the ENT saw nothing and said he could do nothing for my ear pain.  I went back again in 6 months with burning ear pain.  He tested me for allergies, I do have many allergies.  blah blah blah……I go to a Pain clinic for chronic back pain.  So I have been taking pain medicine…. lately (about 6 months) the pain meds DO NOT help!  I went into for a cortosone shot and the surgeon took an x-ray of my jaw… he didn’t diagnosis me but told me to see a surgeon who does do tmj surgery asap.  the earliest I could get in was 3/1/13!! Are they crazy?? I then switched to another surgeon and they said 3 weeks-better but still I’m going crazy… I called today and they had a cancelation for TODAY!!!   I read my MRI and the report read- Meniscus is anteriorly desplaced,elongated and deformed.  I am in Stage II of Internal Derangement.  When I read up on the reason for why I have such pain could be due to a “Blow to the Face”  well I was hit was a lacrosse ball and my zycomatic bone broke about 11 years ago.  I’m shocked that no doctor had asked me this question.  I also have extremely narrow face. 
    With the information I have given you..What should I expect from the surgeon today?
    I am desperate. My life is not mine with this pain. 

  8. I suffer 24-7 I live on pain killers that can’t be good for me I know but needs must.  Constant pain. Not eating properly. TMD is the bain of my life & it makes me miserable.  Excerises Don,t help. Would dream of one day with no pain would be the happiest day of my life. 

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